Wednesday, December 21st, 2011
Given the high rates of autism spectrum disorder (ASD), parents should be aware of the early signs and symptoms that emerge in the first two years of life. There are many good guidelines that highlight the developmental red flags that could require further evaluation. But what about the process of going through an evaluation – or multiple evaluations? This is difficult – both emotionally and practically – and it would be helpful to have some guidance from a mom who has done that.
To that end, I am introducing Lauren, a mom who’s son AF has been diagnosed with ASD. Lauren is a certified special education teacher with an advanced certificate in Applied Behavioral Analysis, so she has experience both as a professional and a parent. Today she is sharing her “insider’s view” on the evaluation process along with tips for parents who are (or will be) going through this:
Recently a rerun episode of Law and Order SVU brought up a key issue that totally connected to me and everyone else that is going through the evaluation process. The psychologist on the show was talking to Detective Benson about having a mother whom was an alcoholic. Detective Benson said: If you talk about it out loud then you are admitting that it is happening, that there is a problem. It reminded me of when the first evaluation for AF was taking place four years ago – especially all the questions I was given and how my answers were so ambiguous and now I can say that is because I was afraid to admit that the disability was real. So, based on my experiences, here are some recommendations for the evaluation process.
Never say sometimes – give yes or no answers only. I would answer so many of the questions with the word, “sometimes.” However, by giving answers that were not truly accurate, these evaluators may give you a false sense of hope. For example, if the question is “Does your child get an object if you ask him/her to get it?” your answer should be yes or no.
Tell about any odd behaviors you may see even if not seen by that evaluator. Autism is not something you can determine by a blood test. It needs to be diagnosed through direct observations. However, the day the therapist comes in, your child may not be exhibiting the usual behaviors. You may think “Maybe I’m wrong, maybe these behaviors aren’t always occurring.” If you feel the therapist is not seeing your child in their true form, show video, and/or describe the behavior to the best of your description. For example, AF would like to look at the window and stare while squinting his eyes – this is a form of stimming (self-stimulation) known as sighting. However it only occurred when it was foggy outside, and it was sunny the day of the evaluation.
Listen to your gut feeling and don’t give up on getting an answer. The first two therapists told me my son was not going to require services. Wow, I remember feeling happy – yet confused and in fact more anxious. I even took him to a different doctor to be told that his son didn’t speak until he was 4 and he’s a lawyer now, so not to worry. Thank goodness for the third, the speech pathologist who came in and saw some of my concerns and she recommended the psychological evaluation which did confirm my gut instinct – ASD.
These tips from Lauren are especially important because early intervention typically leads to notable improvements in behavior. Furthermore, as the causes of autism remain a mystery (click here to read more about the ground breaking twin study that I selected as 1 of the 6 most important studies of 2011), the most proactive thing parents can do is seek out evaluations if they see potential signs of ASD – and keep in mind these suggestions that can help you get through this.